Going Gf Without Diagnosis

[lorka150]

Hi everyone.

I think I might have celiac disease, and have gotten the bloodtest. I haven't gotten the results back yet but I am wary of them anyway - I mean they aren't totally accurate, PLUS my diet isn't really high in gluten. Does it have to be?

But, I do feel as though I have a lot of the symptoms - in fact, I was brought to tears reading Sasquatch's post becasue it was putting my life into words - incredible.

Anyway, I don't need to list my symptoms, we all know there are tonnes of variations.

My question is - is it worth it to try a gluten free diet, and see how I feel? Should I wait on the results? I've been dealing with this gastro-garbage for so long that I feel as though I just want to test it out and see.

Thank you.

[Guest nini]

My personal opinion, it won't hurt to try the diet. BUT... and here's the kicker, if you want a positive diagnosis by a Dr. you may have to follow their time frame... Keeping in mind that you may not technically have Celiac YET, you may have a gluten intolerance that is causing your symptoms. So... if you are comfortable self diagnosing and going gluten-free on your own before getting your results (and regardless of what those results say) I say go for it... but if you want a Dr. to give their blessing to it, then hold off. If after all testing you still don't have a definitive answer, it still won't hurt to TRY the diet anyway and see if it helps you. Give it time though because it may take you a while to see a difference. Then again, you may feel better almost instantly!

[KaitiUSA]

If you do not care about the testing then I would try the diet out and see if it helps. Your body will be able to tell you. You do have to be on gluten for 3 months prior to testing with eating equal to about 2-3 slices of bread a day for testing to be accurate. However, even if the results come back negative you could still have gluten intolerance.

[liz0324]

My experience has been a little different...a couple years ago after the birth of my 1st son, I started getting increasingly sick whenever I ate pasta. At first I wasn't sure what was causing my symptoms, but eventually I was able to determine it was the pasta noodles. So I stopped eating pasta altogether around 18 months ago after a severe episode when I was pregnant with my 2nd son. It was embarassing telling people "I'm allergic to pasta...I think it's the semolina"

Then, when my 2nd son was around 6 months old, I noticed symptoms starting whenever I ate various wheat products, especially pizza. So I tried eliminating wheat. I wasn't very careful about reading labels at this point. I went on this way for several months until I gradually started noticing new symptoms with oats, as well as increasing sensitivity with modified food starch. That is when I started suspecting I might be a Celiac. I still wasn't totally gluten-free, although I was close. I still ate products containing barley.

Then, not even a month ago, I got very sick from eating HALF a Nestle Crunch bar (contains barley malt extract). After that point, I decided to go totally gluten-free. I have had no problems since then. I am very careful about everything I eat, and have become an expert label reader.

My concern is that I know I have eliminated all possibility that I might be diagnosed by a doctor. I cannot go back to eating gluten now, my sensitivity keeps increasing. Even though I can see that the diet change has obviously fixed my symptoms, I feel like I want some kind of confirmation. Sometimes I feel like a hypochondriac and wonder if it's all in my head...especially now that I am symptom-free! It's been such a long road figuring out what is going on with my body and now I realize I am faced with this life-long diet restriction. I suppose I should just trust my body and not worry about getting that final confirmation.

Are there any other self-diagnosed Celiacs out there? Any women whose symptoms seemed to come with pregnancy/childbirth?

Lonely Liz

[Corrine]

Hi Liz,

I am a self diagnosed Celiac. I too eliminated things one by one. Then it was discovered that my daughter was Celiac. She was diagnosed by blood test only as she was too ill to go on for any more testing. So I started to do her diet as well. I don't know for sure if I am Celiac but I'm not willing to go back on wheat to get a gold seal diagnosis. I not only lost weight but lost inches because I was bloated all the time. I do feel better even though I'm still ironing out the wrinkles in my diet.

[Guest nini]

Trust your body. Your body is telling you everything you need to know. Just listen!

[pixiegirl]

There are a lot of self diagnosed Celiac's around, I guess I'm one. I had problems for 11 plus years and my doctor did "the blood test" for Celiac. Right after I had the test I went gluten-free and by the time the results came in a week later, after just one week of gluten-free, I felt wonderful and most of my symptoms were gone. Interestingly when I went to my DR. for the results of the test, I was sure it was going to be positive..... he tells me its negative.

I was so confused and told him how all my symptoms went away after going gluten-free and he told me to begin to eat wheat again, its good for me and that I DO NOT have celiac. Well, I thought, "forget you buddy". I just couldn't risk being so sick again.

Then 3 months after being gluten-free I got glutened at Thanksgiving and that clinched it for me. I don't care what the stupid blood test said, after being glutened just once my symptoms came back with a vengence and lasted a good 2 weeks.

I finally paid for a DNA test, which doesn't tell you if you have Celiac, just if you have the genes that carry it and I do I have 2 DQ8 genes. The genes along with my gluten-free history, and I'm positive beyond any doubt that I have Celiac, blood test be damned.

I guess for some, having a doctor tell them they have it for sure is important. For me its not necessary at all, I eat gluten and get sick, therefore gluten doesn't agree with me. Easy answer: stop eating all gluten. And I have.

I'm very sensitive too, now if I accidently get glutened I'm sick for a good 6 weeks, I do get progressively better with each passing week but my symptoms take forever to go away now, so I'm really careful in avoiding it.

Susan

[liz0324]

Thanks everyone. Sometimes I feel like I am just losing it. It helps so much to talk to others out there!

[cgd]

Hi and welcome! I didn't test either, just figured it out by process of elimination. I can't go back now, and even if I did, I might only have gluten sensitivity or intolerance rather than full-blown celiac disease. Hopefully the genetic testing will be more accurate eventually.

[ianm]

I am another self diagnosed and see no reason to get tested. My health changed so dramatically after going gluten-free that a test really won't tell me what I already know. Either way the only thing you can do is go on a gluten-free diet.

[tarnalberry]

As evidence from my sig line, I'm sorta self-diagnosed. I asked my doc to run the tests (seemingly out of the blue, I'd imagine she'd say), and the results were inconclusive, though I had been gluten-free for two weeks. I did a challenge - I ate a hearty serving of gluten - and it made me feel crappy. There was my test. I've been gluten-free since, and am not worrying about a formal diagnosis in my charts or a biopsy.

It's your call. It's important to listen to your body - your body knows your body better than your doctor knows your body. But if you know you can't stay gluten-free without the external incentive of a doctor telling you so, then you should stick with gluten enough to get tested. Of course, I'm not suggesting that's the best route - the best route is to listen to your body - but for some people, it might be necessary to give them the willpower.

[mhope]

hey!

I havent been officially diagnosed either. I had a blood test that came back negative, but my diet wasn't super high in gluten (at least not recently) prior to the test. I got so frustrated with the poor communication between the health center and the gi specialist and my inability to get an appointment with the specialist (after a month I still couldnt make an appointment). Anyway, I felt like I was waiting to get tested to receive possibly negative results only to try the diet anyway. So I figured why wait. I agree with others, if you don't need the 100% official diagnosis (which you may not get anyway) try the diet! I am only 5 days in and I'm starting to feel better. If it works, there ya go!